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Réponse de Wingman
11 juil. 2016, 19 h 30

Standing on the battlefield again, but wondering if the war has been won.
I don't know how at times my eyes and hands are so steady while my heart trembles and weeps. I guess it's because the guns are still raised.

While trying to enter a clinical trial, they have discovered my friend has now a brain tumour. It is very aggressive and new symptoms come daily. It is not responding to meds. It is a difficult few days, and a bit hard now to know when and how to speak my truth....for now my truth is fear. 
One of her other friends, whom I know of only, I do not know her, reached out and shared some concerns so I take some relief in not feeling so isolated. 
Day by day-thats the key yes....but how can 1 day go on so long.
WM 
 
Réponse de Wingman
21 juil. 2016, 2 h 01

So this is it. This is the hell.
These are the fears come bigger than life...that I have imagined and wondered about.

This is the change, from hope to defeat.
Of all the things I witness.....this is the hardest.

Is enough ever enough....has it been enough already....and have I done enough.

I have struggled with anticipatory grief....I am selfish in wanting to  deny a new world without my friend to be my biggest fan, to be excited about things I do, who understands my successes and my failures.
In these times I can take strength and I can give it....but my defeated mind is mine alone and I can not share that. I have no right to be defeated, I am and will continue to be....only a pillar.
WM 
 
Réponse de Carlyn
24 juil. 2016, 20 h 54

Hi Katherine, day to day for me seems to change with each passing year. I lose something each calendar year it seems. This year i'm struggling with physical symptoms more often. Still adjusting to the move, trying to settle, so when I can it's crafts here and I was enjoying brief walks. The heat is impossible for me so looking forward to fall so I can get outside a bit every day again.  The internet itself helps me a lot to get lost in art galleries and museums and interesting people and places. 

Wingman, we've been thinking of you and I had you on my mind a lot for some reason. I was glad to see you update but am very sorry to learn the situation is worsening for your friend, and for you. 

Wingman, I know we all feel that as caregivers we have no rights, and need to shoulder all of these experience without leaning or showing any impact it's having on us. But that's what we're here for and I hope you know it is your right to feel defeated and sad. You are a pillar for and with your friend. But when you're here at VH, you're with friends who can be a pillar for and with you. Please share here with us. I've been there... I'm new here but everyone here is built for this and would want to support you too. Please lean on us.

Wingman, btw, your writing is beautiful. I am very sorry for where things are but you express it in a beautiful way. Clear, painful, but getting right to the heart of it all as a caregiver. ((Hug))

We're here.

Carlyn 
 
Réponse de Carlyn
24 juil. 2016, 21 h 01

Dear Wingman, I was remiss in adding that I know you love your friend dearly.

The term caregiver sometimes implies a distance between the people involved but my brain is mush and can't think of a better word. 

Just wanted you to know it's very clear by your writing that you and your friend have a beautiful relationship. 

I am sending you virtual preparatory courage and a hug. 

Carlyn
 
 
Réponse de Wingman
25 juil. 2016, 23 h 39

Thank you Carlyn. You make it feel safe. I admire your strength and ability to give of yourself so empathetically to others. 
The days are tough....watching as once everyday tasks require careful thought and planning...and by this I mean going up or down 2 steps. It is a strange situation as there is no family involved....it is a circle of her friends. I am grateful for one of them in particular whom I had met before on occasion but am now conversing and sharing with. I don't speak of my fears there though as she and I need to maintain our own balances as we navigate the daily challenges. 
So I thankful and grateful to allow things to slip a bit here....your understanding and thoughts allow a break in the times I get stuck in my mind.

The highs and lows of the day can change by the minute and that has taken some getting used to. I am doing my best to be patient...I am a bit of a panicked by nature.
My solitude continues to be my sweet pony. I think daily of Katherine's words.....Ride Wingman Ride.
And I do.
Thanks you for your support. It is hard to be a private person struggling
WM 
 
Réponse de Carlyn
02 août 2016, 16 h 26

Wingman,

Being a private person struggling resonates with me a lot. I get it. I think anyhow. Much respect to you.

It's very hot here. Not sure where you are or if you even have time just now or inclination even but I'm glad you have your pony and can ride for self care and happiness.

I was thinking of you and your dear friend this weekend. Will continue to hold peaceful thoughts for all of you during this time.

Carlyn 
 
Réponse de Wingman
03 août 2016, 11 h 47

We are having a troubled time here. On Fri I called for the ambulance and my friend was admitted. She can't walk, she can't eat and now required regular pain control. She is of the thinking that she needs to get stronger so she can get back home and start more treatment. She has no thoughts to accepting where this disease has now taken her. This leads to great anxiety about the fact she can't eat.....as she desperately wants to. It is difficult to watch this struggle....the doctors and nurses are very good in respecting the direction she wants her care to go while also acknowledging there is little they can do. They have suggested she could go home, but only when she makes the decision to be comfortable for the remaining time as opposed to choosing continued treatment. Am going to local hospice today to see how their programs work. I knew this day was coming. Now this day is here.
WM 
 
Réponse de Carlyn
03 août 2016, 21 h 25

Dear Wingman,

Consulting your local hospice is a great idea. You need support during this. I remember it as a very overwhelming and confusing time, plus painful to witness at times.

I am very sorry this day is here. You are an incredibly compassionate and caring friend, as is your friend to you from what you've said previously. My heart is with both of you.

In the same time frame with my Mom, she was very similar. I deferred to her and focused always on reassurance and being positive for her but not to an extreme. Just in a calm, supportive manner of conversation or voice. That was really all she needed and seemed to work...to play along sort of ... her comfort was the primary focus so I know you're of same mindset, so sharing in case it helps.

I did search the forum as the resources here are vast and an article which may be of help or interest. But if you have no time or inclination to read, please ignore; that's understandable. I remember well what this time is like. 

Article is entitled Final Days, when death is near. Just wanted to alert you so you're not shocked by the title. It is very helpful though.
http://virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/When+Death+is+Near.aspx

This one as well, What Do I Say http://virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Communication/What+Do+I+Say_.aspx

My heart goes out to both of you.

Carlyn 
 
Réponse de Wingman
03 août 2016, 22 h 48

Thank you Carlyn. I have read that post in the past and will revisit it again. I am just west of Toronto..and yes it is warm these days. I enjoy the heat but am surprised by the fact I do not have an inclination to ride my pony...it has been 7 days. I appreciate that you suggested I might not ride her...I am surprised by how I feel I can't but take comfort in understanding that you suggested I might not want to.... that my focus change is OK for now. I did see the local hospice....appeared as though they could offer respite care should my friend choose to spend her days at home, but only medicinal comfort if she chooses to reside at their facility. That is OK....the hospital is accommodating well. The days change from morning to noon to night- getting used to not knowing what to expect and also better at being adaptable. I have many of her day to day tasks to take on....with the house, vehicles, animals etc as she lives on her own...and I find that being task oriented keeps my mind occupied. Feeling useful is balancing.

Everything you offer....your experiences....they do all make sense for me and allow me to feel that my thoughts and feelings are ok because someone else has experienced and understood them.
Thank you Carlyn. I will press on 😓
WM 
 
Réponse de Wingman
03 août 2016, 22 h 56

I am in a box.
I usually exist in a circle....where I can float around and go to all and any area that I feel needs my attention.

The box though, is small. It has distinct corners and short side and contains only a few things.
The things in my box are very important ....but they are also difficult. If the edges would soften a bit then I could revisit some of the circle I am used to.
But the edges don't soften. They are straight and fixed.

The only thing the box can to is get a little bigger.
Sometimes it stays the same size for several days, but then a day comes where it gets a little bigger and more is allowed in the box. It is good....that more can come in, I think it means we are getting somewhere.
I am content to live in the box.....this is ok for now.
Soon I will be strong enough to bend the sides.
WM 


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